       |
November, 2001 This web site is dedicated to helping everyone learn more about what a special girl Kacie is and to educate everyone about the disease that she is fighting.
Diagnosis and Beginnings November 1, 2001 - Day +21 - A Drop in White Blood Cells... Kacie’s white blood count dropped to 100 today. This was discouraging, but after discussing it with her doctors, we realize that the white blood cells could be going out to fight all the infections and that is why the count dropped. They did redraw the white blood count several hours later and it came back at <500. We are praying for the white blood count to multiply tremendously tonight. Kacie’s gram stain came back positive again today for the meningitis. It was recorded as few and in pairs and chains. This means that there are still bacteria in the spinal fluid. The bacteria are probably dead since all of the spinal fluid cultures have been negative. She really needs the white blood cells to help purge all of the bacteria out of the spinal fluid. The doctors are planning on treating the meningitis for at least a total of 21 days with the antibiotic in the spinal fluid. That would be at least until next Saturday. Normally, the doctors will do a bone marrow biopsy at day +21 to determine the donor cell status. This is to determine how much bone marrow is from the donor. Due to Kacie’s medical status, the doctors decided not to perform a bone marrow biopsy yet. There is another blood test that they use that can also give a good indication of donor status. They ran this test on Kacie and it usually takes about five days to get the results back. Hopefully, the results will show some donor status. Kacie felt much better today. She had stayed up until 1:00 a.m. watching movies last night. Today she has been a little tired and has slept quite a bit. She probably has the nights and days mixed up. The physical therapist came in and worked with her some today. Her legs are getting sore from lying in bed, so they are giving her massages. Of course, Donald and I asked when we would get our massage. Kacie called and spoke with her sister, Erin, tonight. Erin was so excited since she hasn’t been able to speak to her in about two weeks. It is exciting for us to see her making progress. Thank you for all your many prayers and support. Pray for lots and lots of white cells. All the letters and emails have been very encouraging for us keep sending them. Thanks Nancy for getting a message board on Kacie’s website! We can’t wait to read her messages. Smiles & Giggles, Donald, Kathi, & Kacie November 2, 2001 - Day +22 - Great Recovery on White Cells... Kacie’s white blood count made a great recovery by increasing to 900 this morning. After such a large drop, it is great that it jumped right back up. The white blood cells are very important in helping to fight the infections within her body. Kacie stayed up until 4:00 a.m. watching movies with the nurse. Today she was very quiet, probably because she was tired. She takes short naps every couple of hours. She had another CT scan today. The doctors are seeing some improvements from the meningitis, but there is still infection and it will still take time for recovery. Kacie got a really nice card and gifts from her donor. It is wonderful that she is keeping in touch with Kacie. We look forward to the day when we can all meet each other. We are planning on moving our stuff into the apartment tomorrow morning. We are still going to use the Ronald McDonald House address; which is Kacie Goodwin, c/o Ronald McDonald House, 608 Ontario Street SE, Minneapolis, MN 55414. Please continue to pray that Kacie has a full recovery from the bacterial spinal meningitis and the bone marrow transplant. We know that it will take time to heal from the meningitis. We are praying for a quick recovery. Smiles & Giggles, Donald, Kathi, & Kacie November 3, 2001 - Day +23 - What an Increase!!!... Kacie’s white blood count jumped to 2900 today!!! We are very excited! As we have been mentioning in the past, Kacie needs the white blood cells to come in quickly to help in her recovery. The gram stain from her spinal fluid last night came back negative for bacteria again. These are very encouraging signs. Kacie has been running high blood pressures, probably due to the various different medications that are being administered. It is extremely rare that they see spinal meningitis in a bone marrow patient, not to mention that she is also a fanconi anemia patient. With fanconi every cell in the body is more sensitive. They are still learning about how different illnesses affect fanconi patients. Since Kacie is not able to get up yet, we help to stretch her muscles out. We are also working with Kacie to do breathing exercises to expand her lungs. We moved all of our belongings from the Ronald McDonald House into our new apartment. Thanks to our wonderful care-partner, Kate Montgomery, and her friend, Mike. They were so generous in lending their time and energy to help us move. It is a real blessing to have such wonderful and caring people helping us in every way. THANKS! Please keep praying for Kacie’s recovery! Smiles & Giggles, Donald, Kathi, & Kacie November 4, 2001 - Day +24 - "Kacie Body" Roller Coaster Ride... The big numbers of the day are 3700 white blood cells and 163 platelets. These numbers are looking much better. Kacie received a very cute poem from a friend that we wanted to share with everyone. We will leave the author as anonymous since we didn’t ask for reprint rights. Quick make those cells comfy So they will stay Tell them they cannot Go outside to play Invite all of their friends To come inside To go on a "Kacie Body" Roller Coaster ride When your arm is up They will ride down Through crooks and turns An all around Through your body To the tips of your toes And when you raise your legs They will ride to your nose Such a fun ride They won't want to leave This is what I truly believe.... Kacie really loves the email messages, the poems, the letters, the online greetings, etc. that everyone has been sending. These are so uplifting to us. Kacie had a nice day today. Her friend, Cole, came by and brought her some activity books. Cole is really a sweet boy and we can hardly wait until Cole and Kacie can play together again. Right now Cole can only wave at Kacie through her window in her hospital room. Kacie’s blood pressure and temperatures have been better. Her glucose levels are constantly changing, so they have to increase or decrease her insulin intake depending on the circumstance. Everyone is really getting to know Kacie on this unit. A lot of the nurses ask to be in her room. She has a nurse assigned at all times. We tease with the night nurses, calling them the party nurses because Kacie usually wakes up in the middle of the night and wants them to watch movies with her. We want to thank everyone at Seaford Baptist Church for all of your support and prayers. We really miss being there and we can’t wait until we come back. We especially want to thank all the children that have sent her email messages. It is great to have so many friends that really care about her. Thanks for all of your prayers and support. Again, thanks to everyone!!! Please keep up the prayers. We are looking forward to the day that Kacie is fully recovered from the meningitis and transplant. Erin: Kacie wanted me to write that she loves you and misses you! Smiles & Giggles, Donald, Kathi, & Kacie November 5, 2001 - Day +25 - White Cells are Climbing... Kacie’s white blood cell climbed to 4700 today! She had a positive gram stain from the spinal fluid last night; which means there are still bacteria. The doctors are discussing different treatment options. Kacie will have another MRI done tomorrow to determine whether the meningitis is getting better. They are also discussing another antibiotic that she may need. We played “Guess Who” with her last night before going to bed. She seems to be real tired and slept most of the day today. She saw a lot of different doctors today, so that probably made her very tired. Kacie is on a scheduled dosage of platelets since she needs to stay above 100,000 and they have had a hard time keeping it that high. There is a shortage of platelets and they have had to wait several times before she can receive them. Thank you to everyone who continuously supports the Red Cross by donating blood. It is a life-saving gift that is greatly appreciated by those who need the transfusions. Please pray that the MRI results will show positive results. Pray also for all the other children and families as they are dealing with some very difficult illnesses and treatments. Smiles & Giggles, Donald, Kathi, & Kacie November 6, 2001 - Day +26 - Another Exhausting Day... White blood cells have risen to 6700 today! We are very excited at the rate of the white cells increasing. Kacie has been sleeping a lot in between the various doctors that come in to examine her. She gets to blow bubbles and party horns to help strengthen her lungs. Although she is in the hospital, she still tries to have fun! The MRI results showed that she still has the meningitis. She had to have another procedure this evening and she is doing well. We are very exhausted and will be going to sleep soon. Our church, Seaford Baptist Church, is hosting a barbecue dinner for Kacie this Friday night. Please check out the fundraiser page for details. Thank you to everyone who is organizing this dinner. We heard the spaghetti dinner that you had was very delicious. Please continue to pray for Kacie’s full recovery. She has experienced quite a bit. God keeps showing us miracle after miracle! We are so thankful! God Bless to everyone! Smiles & Giggles, Donald, Kathi, & Kacie November 7, 2001 - Day +27 - "Miracle Girl"... Kacie is our Miracle Girl! Her strength, determination, and faith in God’s healing power have pulled her through some very rough times. The last three weeks have been very challenging and we have witnessed God’s miracles. When Kacie contracted bacterial spinal meningitis, she didn’t have any immune system. She had already been through radiation and chemotherapy to kill off all of her bone marrow. She was diagnosed with bacterial spinal meningitis on day +6 (October 17, 2001). It is very rare for someone to have meningitis while undergoing a bone marrow transplant. There are only two instances that they can recall at this center. The last time was over five years ago. They immediately started Kacie on an antibiotic that they felt would kill the bacteria. They ran sensitivity tests on her spinal fluid with the bacteria to determine the most effective antibiotic to use to destroy the bacteria. After getting the final results they discovered that they had chosen the proper antibiotic. They were administering the antibiotic through her central lines. Without going into a lot of details, following are some of the major events from the last few weeks: On October 20, 2001 they discovered that Kacie had hydrocephalus; which is fluid on the brain. The meningitis caused the hydrocephalus. Both of Kacie’s ventricles in the brain were enlarged and she also had edema on the brain tissues; which is inflammation. Since the doctors were concerned with the spinal fluid pressure Kacie had to have a surgical procedure, called a ventriculostomy. A ventriculostomy is a procedure where they put a shunt with a drain directly into the ventricle of the brain. They decided to put a shunt into the right ventricle. Kacie’s bone marrow transplant room is equipped as an intensive care room (ICU). They immediately turned her room into an ICU room and assigned a nurse to be in her room at all times. The neurosurgeons performed the ventriculostomy in her room, and then took her for a CT scan to make sure that she wasn’t hemorrhaging (bleeding). Kacie did great during the surgery and she didn’t have any internal bleeding on the brain. Our next big concern was that she bled from the incision for about three days. They tried several things to stop the bleeding and finally had to restitch the incision. They use the shunt to put an antibiotic directly into the ventricle and to pull fluid out when the spinal pressure is to high. They run various tests each day on the spinal fluid. They test how much antibiotic is there, they culture for bacteria, they test the gram stain for bacteria, and various other tests. Based on several CT scans and MRI results, it was determined that Kacie’s right ventricle was getting smaller (back to normal size); yet her left ventricle was still large and there was still edema (inflammation). Kacie had shown positive progress each day and then it was as though she hit a plateau. One of her neurologist was concerned that she wasn’t improving, so he ordered another MRI yesterday. They compared it to another MRI that was taken a few days before and discovered that the left ventricle was a little larger than the previous MRI had shown, plus there was a lot of edema. So, Kacie’s room immediately became an operating room again. She had to have another ventriculostomy, only this time it was put in the left ventricle. Again, she was taken for a CT scan to make sure there wasn’t any hemorrhaging (bleeding). She did well during the surgery and the scan didn’t show any hemorrhaging. Earlier I mentioned how rare it is for them to have someone with meningitis going through a bone marrow transplant. Well, it is extremely rare for them to have someone with a single ventriculostomy going through a transplant not to mention dealing with Fanconi Anemia. We believe Kacie may be the first in the bone marrow transplant unit to have a double ventriculostomy. Every decision that the doctors are making is carefully thought out, researched, continuously discussed with the different specialists, and discussed with us prior to making a final decision on the treatment plan. Sometimes there is difference of opinion, but ultimately all the doctors will agree on the best plan. The reason is because it is so rare and they want to ensure that they make the best decisions on her care. Today Kacie showed very good progress. She was awake for a six-hour span and was telling jokes to the doctors. She was a lot more alert today and the doctors’ examinations went well. They were very pleased with the results they were seeing. We feel extremely blessed that we have seen several miracles on this hard journey. Thank you to everyone for all of your love, support, and the many, many prayers. Please continue to pray daily for Kacie’s full recovery. God Bless Everyone! Smiles & Giggles, Donald, Kathi, & Kacie November 8, 2001 - Day +28 - First Bite... Kacie had her first bite of any food in twenty-two days. She ate five bites of orange sherbet. It was great to see her eating something. She has been getting all of her nutrition through her central lines. Kacie’s white blood count jumped higher again today to 7900!!! This is exciting news since she still has a lot of infection to fight and these cells will help make her body stronger. Kacie will start on a new antibiotic this evening. The doctors are concerned with the bacterial meningitis infection and feel they need to use a more sensitive drug for this type of bacteria. This particular antibiotic has some rare side effects that they were concerned about during the time her white blood cells were so low. One of the side effects is that it may cause seizures; however, she has been on seizure medicine for several weeks now. The other side effect is that it may suppress the white blood count. The doctors will monitor her dosage and her responses to the drug very closely. They really believe that she needs this drug to help with the inflammation and infection. Kacie did very well for the doctors this morning. She stayed awake for most of the morning. After physical therapy she was tired and took a long nap. We have her bed propped up to where she is almost sitting up. She seemed more comfortable today. Please remember to visit the fundraiser page to get details on the barbecue dinner that our church is hosting tomorrow night. We want to thank Seaford Baptist Church for all their hard work and prayers. We also want to thank the many Sunday School classes for all their support. We certainly miss everyone! Please pray that Kacie won’t experience any of these bad side effects to this new medication. We know that this is just another step in ensuring that she has a full recovery. Smiles & Giggles, Donald, Kathi, & Kacie November 9, 2001 - Day +29 - Relaxing Day... Kacie had a very relaxing day. She was tired and slept quite a bit. Her white blood count was at 8100 today. This morning her platelets were at 79,000, and then she received platelets to give her a boost over 100,000. When they retested her platelet count it had gone to 199,000. This is the highest platelet count that she has been. Kacie had a visitor today. Her friend Cole Smith came by and waved at her through her window. Cole's parents just got results back on his donor status. His donor status went up to 78%. This is exciting news since his donor status had decreased into the teens before (somewhere around 14%). The doctors were surprised. God is really working miracles! Donald stayed over at the apartment all day since he hasn’t been feeling good and didn’t want to get around Kacie if he was sick. He went to clinic yesterday and the doctors believe he has a viral cold, but they are treating him with antibiotics in case it is bacterial. We both need to stay well in order to get around Kacie. We heard that the barbecue dinner at our church, Seaford Baptist Church, was great! Thanks to all the many volunteers who worked so hard to make the dinner a hugh success! We really appreciate all that you are doing for us. Previous neighbors of my family, Nathan & Kaye Reid, held a garage sale to benefit Kacie. The Reids knew us when we were very young and are very good friends of our family. We are so thankful to them for all their support. Kacie will probably have another MRI tomorrow to determine if the inflammation and swelling is starting to come down. She did start on the new antibiotic last night and so far is doing great with no side effects. Please continue to pray for her healing! Smiles & Giggles, Donald, Kathi, & Kacie November 10, 2001 - Day +30 - A Smiles & Giggles Day... The best way to describe today is that we had a “Smiles & Giggles Day”! Kacie woke up in a very good mood and was laughing and telling jokes. Ronald McDonald came by to visit her and she told him this joke, “How can you tell who Ronald McDonald is in a crowd of people with no clothes?” This is the same Ronald McDonald that is on all the commercials for McDonalds. We took pictures of him with Kacie. Ronald thought for a long time, but didn’t know the answer to her joke, so Kacie blurted the answer out… “He’s the one with sesame seeds on his buns!” Ronald McDonald thought that was the funniest joke and he asked Kacie if he could tell the other children her joke. Kacie’s white blood count went up to 10,300!!! This is exciting news especially since she started the new antibiotic that may suppress the white blood count. The doctors decided to continue her GCFS medication; which is a growth factor that helps white blood cells increase faster. They will probably continue the GCSF until Kacie is finished with the new antibiotic. Once they stop the GCSF, they have informed us that her counts would probably drop some. Kacie got her nasal gastric (ng) tube out of her nose last night. This tube was to help give her oral medications and help pull fluids from her stomach. She has done great without it. It was hard for her to talk because it would vibrate against her vocal cords. Now that it is out she is talking louder and a lot more. Plus she has been giggling quite a bit. It is wonderful seeing Kacie smile and laugh again. She even sat up for a little while and colored some. She called Erin and talked to her for a while. Erin was so happy that Kacie sounded better! She also spoke with Grandpa and Grandma Honey (Sam & Jeanette George), and they were very excited to hear her talking and laughing! Then she called Grandma Normie (Norma Faulkner), who was also very happy at her progress! The doctors decided not to do an MRI today, but wait until Monday so that the new medicine has time to work some. They have been decreasing the amount of pain medicine that she receives and stopped one of the antibiotics that she has been receiving. They have also stopped her insulin drips since she has been able to maintain good glucose levels. These are all big steps towards getting better! As Rebecca, from Seaford Baptist Church, wrote in an email message “we should be able to hear the "Amens", "Yes's" and other expressions of excitement.” This is just the beginning of a lot of good news and miracles on her recovery! Thank you to everyone for giving us encouragement and support during this difficult journey. Please continue to pray for Kacie’s full recovery! God Bless to all! Smiles & Giggles, Donald, Kathi, & Kacie November 11, 2001 - Day +31 - Another Gr..Gr..Great Day!... Kacie had another great day! She woke up in a very good mood and she said that she “feels GR…GR…GREAT”, just like the ole Tony the Tiger commercials. Kacie’s white blood count decreased to 7500. This was a big decrease, but the doctors said that it is still in normal range. They also explained that we might see fluctuations in the white blood count. We are all praying that the number increases tomorrow. Since she is on an antibiotic that can suppress the white blood cells, we are praying that her count stays high. The nurses had to draw blood from Kacie five times this morning because the lab had problems getting an accurate platelet count. They said the blood was clotted so they couldn’t get an accurate count. Since she had so much blood drawn, her red blood count went under 12.0; which is the parameter that the doctors had set. Her red blood count dropped to 11.7, so she had to get a red blood transfusion today as well as platelets. She hasn’t had to receive red blood since last Tuesday. We watched the movie, “Jingle All the Way”, with Kacie today. That is a really good movie. As we were watching it, we discovered that it was filmed here in Minneapolis, Minnesota. They even showed the Mall of America. Kacie really loved this movie and it was great hearing her laughter. Kacie is scheduled for an MRI tomorrow to determine if the edema (inflammation) and infection are getting better. Please pray that Kacie’s white blood count increases and her MRI results show LOTS of improvement! Also, pray that a permanent shunt won’t be needed to help with intra cranial pressure. We greatly appreciate everyone’s support! THANKS! Smiles & Giggles, Donald, Kathi, & Kacie November 12, 2001 - Day +32 - GREAT NEWS...Read On... Kacie had another great day! Her white blood count came up from yesterday to 8700. The doctors are reducing her pain medications and reducing the medication that she receives for abdominal cramping. When Kacie had physical therapy today, they had her sitting up on the side of the bed for three minutes. Plus she played a memory game with the physical therapist. She did very well. The doctors are pleased with the progress that she has made thus far. She hasn’t been able to move her toes yet, but she is able to lift her legs up. She can lift her head and she helps move herself in the bed; which is very good. Today Kacie went for an MRI. The results looked the same as the last one; which was done on Tuesday. The doctors believe that they need to continue treating the infection with the new antibiotic that they started. She has only been on the new antibiotic for three days, so they didn’t expect too much of a change in the results. They plan to check another MRI in about a week, that way it will give enough time for the medication to work. They have also decided to increase the dosage. So far, they have decided to wait on determining whether she will need a permanent shunt. Now for the GREAT NEWS! On day +21 they normally do a bone marrow biopsy to determine donor status. Since Kacie was having complications from the meningitis, they decided to perform a blood test for donor status instead. They had to send out for the results. We’ve been so focused on getting her better from the meningitis that we forgot to ask about the results from this test. Well, tonight we asked and the doctor said, “Oh, she is 100% donor cells!!!” We are so excited at this news. The doctor was also very excited. We asked if it could go down and he said that he hopes not. The next time they will check donor status will be at day +60. Please keep Kacie in your thoughts and prayers. We are praying for her white cells to continue to climb, that the edema (inflammation) and infection disappear, that she continues to have 100% donor cells, and that she has full recovery. God Bless! Smiles & Giggles, Donald, Kathi, & Kacie November 13, 2001 - Day +33 - Ring Toss... Kacie had another really good day. She woke up smiling and giggling. Everyone is so happy with the progress that she has been making. Each day is just another blessing as we continue to watch every baby step leading to a full recovery. Her white count dropped down to 6800 today; which is still in normal range. Please help us to pray that they increase or at least stay stable. They increased the dosage of the antibiotic and Kacie has been doing well. According to the doctors she will probably stay on this antibiotic for at least two weeks, possibly three weeks. Kacie sat on the side of the bed for about ten minutes during physical therapy. She had the biggest smile on her face. This is just another baby step that we’ve been praying to happen. She played ring toss while sitting on the side of the bed. This may seem trivial, but this was a big accomplishment and took a lot of work. When the neurologist examined Kacie, he noticed that her toes might have twitched a little. This is exciting news. We keep praying that all the edema (inflammation) and infection clears up so that Kacie can move her toes and begin to stand and walk again. Kacie received a really cute poster from the third grade Sunday school class at Seaford Baptist Church. It read, “God hears even the smallest voice”. We truly believe that God hears all of our prayers and we will continue to pray every day. All the children wrote encouraging notes on the back. Kacie asked that we hang it on her wall where she can see it. She really loves the poster, thanks! Please continue to pray for Kacie’s recovery; an increase in white blood cells, edema and infection clears up, wiggling of the toes, more GREAT days, and more baby steps that will lead to her full recovery. We are so thankful everyday for the many miracles that we witnessed and for being blessed with so many supportive friends. Smiles & Giggles, Donald, Kathi, & Kacie November 14, 2001 - Day +34 - Rise & Shine!... At 6:30 a.m. Kacie rolled over, looked at me and said, “Mom, get up! Get out of the bed. It’s time to get up!” Needless to say, I was very tired, but I jumped up at the sound of her excited voice. She was smiling and really wide-awake. So I thought why not let her call dad and let him join us in this early morning rising. She called Donald and said, “Dad, rise and shine! Where’s my egg biscuit?” Donald had to go buy her an egg biscuit. She ate several bites of scrambled eggs, a few bites of biscuit, and some pancakes. This is a big improvement. The doctors are glad that she has an appetite. They said that we should continue to increase her diet; this is the best way to work the stomach muscles again. Kacie had a very big day with all the doctors coming in to examine her; plus physical therapy and occupational therapy worked with her today. Her teacher came by to visit and is hoping that Kacie will be doing a little better by Monday so that she can start to work with her some. Our care-partner, Kate, took Donald & I to a reception for care-givers tonight. They had a really good professional storyteller as the speaker. She told several stories, and our favorite one was “Goldilocks and the Three Bears” spoken in Finnish. The other amazing thing is that she is a survivor of thyroid cancer, Hodgekins’ disease-stage 3, and skin cancer. All of the stories that she told were very fascinating. We received gift bags from the Children’s Cancer Society and Donald and I both won door prizes. I won a gift card to Targets and Donald won a cookbook. Guess that means Donald should be doing all the cooking! We received a wonderful email message from the Red Cross. Several people have been donating blood in honor of Kacie. It is a real blessing to know that people are donating blood that will help save lives. We know all to well how difficult it is to get blood when there is a shortage. Kacie has to have fresh platelets several times a day and sometimes it has been difficult to get them. Thank you to all the blood donors of the world. You are saving lives! Kacie’s white blood cells climbed back up to 9100 today. God is blessing her in so many ways. Thank you for the many prayers! Keep praying for her white count to be high, that her body will reabsorb the spinal fluid so that she doesn’t need a permanent shunt, that the inflammation and infection is eliminated, and that she has full recovery. Also, Cole and his parents need special prayers as he is fighting his illnesses. Please pray for Cole’s full recovery. May God Bless each and every one! Smiles & Giggles, Donald, Kathi, & Kacie November 15, 2001 - Day +35 - A Clot... Kacie’s white blood count is 8700 today. She had a red blood transfusion since her red blood count was less than 12.0. And she had several platelet transfusions in order to stay above 100,000. Last night when the neurosurgeon was testing Kacie’s spinal fluid, he wasn’t able to get any fluid from the left ventricle. This is two nights in a row that this has happened; plus the left ventricle has not been draining for about 72 hours. The neurosurgeon scheduled Kacie for a CT scan this morning. The CT scan showed that the left ventricle appears a little larger than the scan that was done on Tuesday. The edema (inflammation) in the brain tissues have decreased which means the new antibiotic is working. The CT scan also showed a blood clot in the left ventricle at the opening of the tubing that is used to draw fluid out and put antibiotics in. The neurosurgeon tried to flush the tubing with a saline solution to hopefully move the clot. This didn’t appear to help. We will be meeting with the department head of neurosurgery tomorrow to discuss the next treatment plan. Kacie may need to have a permanent shunt. Please pray for another miracle! Kacie has been doing great today. She has been more alert and has started eating some more. We are so grateful and pleased at all the progress she has been making. According to the doctors, they want to treat the patient and how they are clinically; rather than the CT scan. The doctors are really pleased with all of Kacie’s progress. Please pray that the blood clot dissolves and the left ventricle starts draining through the night. We need yet another miracle. Pray for the doctors and nurses and pray that God provides them with the wisdom and skills as they are making difficult decisions on the overall treatment for Kacie’s full recovery. Have a great evening and God Bless to everyone. Smiles & Giggles, Donald, Kathi, & Kacie November 16, 2001 - Day +36 - A Drip! Praise God!... It’s hard to believe but we are excited over a drip. Not to keep you in suspense, but read on… Kacie’s white blood count went back up to 9000. The doctors have decided to take her off of the GCSF; which is a growth factor for white blood cells to see how her body maintains the white counts. Her white count has been staying stable, but they want to determine if they will continue to stay stable without the GCSF. They expect it will drop some, which is normal, but they want to determine how well she can maintain normal white cell counts. The doctors believe that she has been doing well with the new antibiotic. She hasn’t shown any signs of the negative side effects, which is great. We met with the chief of neurosurgery today. He explained that the blood clot is from the surgery of the left ventricular tube being placed. Sometimes people don’t bleed right away, but they may bleed as much as a week later. Kacie’s CT scan that was done yesterday showed blood clots around the tubing. Kacie’s clinical exams are showing good signs of progress, so the neurosurgeon feels we should give it time to heal. The next plans are that a CT scan will be done on Sunday. Depending on the status of that scan, Kacie may need a permanent shunt. The neurosurgeon will test to determine whether she will be able to reabsorb the spinal fluid pressure, if not she will probably be scheduled for the permanent shunt sometime next week. The left ventricle hasn’t been draining for a few days. Last night one of the neurosurgeons came in and tried to flush the line. This didn’t appear to help. We’ve been praying that it starts draining. This morning Kacie was nauseas and started vomiting. We noticed the spinal fluid moving in the tube towards the drain. Now the exciting part… we saw a few drips of spinal fluid go into the drainage tube. The fluid was red which hopefully means that the blood clots are starting to dissolve and the left ventricle will start draining. We kept watching the tube to see how many drips. It was exciting every time we saw one fall. Drips lead into drops and drops can lead into the right amount of drainage. Now for the other exciting news… tonight the neurosurgeon came to draw fluid and put the antibiotic in, and he was able to get a little bit of fluid out of the left side. Please keep praying that the blood clots dissolve on their own, there is no more bleeding, both ventricles drain as needed, and that Kacie’s body will absorb the fluid on its own so that a permanent shunt won’t be needed. Thanks for the messages on Kacie’s message board, all the email messages, and the many cards and letters of encouragement. Keep praying, God is listening and performing many miracles! Smiles & Giggles, Donald, Kathi, & Kacie November 17, 2001 - Day +37 - Keep Praying for a Full Recovery!... Kacie’s white blood count went down to 6900 today. The doctors had stopped the GCSF (growth factor for white blood cells) yesterday. She only dropped by 2100 and the doctors felt that her own body is maintaining the white cell count. They will be monitoring the white blood count to make sure they stay within the normal range. Kacie woke up at 4:00 a.m. complaining of stomach pains and a lot of nausea. After the doctors examined her, they had the x-ray technician come up to her room and take a few abdominal x-rays. The x-ray results were good and the doctors believe that the cramping and nausea are from her stomach muscles starting to work again. The neurologist examined Kacie this evening. He feels Kacie will need to have the permanent shunt. They will be doing a CT scan tomorrow to determine if the left ventricle has gotten any smaller. Depending on the results of the CT scan, they may schedule her to have the permanent shunt put in on Monday. Please pray for Kacie’s full recovery. Pray that the CT scans show improvement and that she has more mobility in her feet. Thank you for your continuous prayers and support for Kacie. Smiles & Giggles, Donald, Kathi, & Kacie November 18, 2001 - Day +38 - Brrrr...It's Cold in Minnesota... The cold weather has arrived in Minnesota! Donald & I went out for a quick walk and we realized that our coats are probably not going to be warm enough for the Minnesota weather this winter. We’re not outside much so we should be alright. Kacie’s white blood count dropped to 3700 today. Her doctor went ahead and started her back on the GCSF (growth factor) to aid in increasing the white blood cells. Her platelet count this morning was 254,000; which is great! They have started her back on a scheduled dose of platelets. Since she is staying well above 100,000, they will be reducing her platelet transfusion schedule to twice a day instead of three times a day. Kacie was very restless through the night due to stomach cramping. She woke up early and was very nauseas. The doctors believe her stomach is trying to heal from the radiation and chemotherapy. She is also tired from lying in the hospital bed. The CT scan that they did this morning looked the same as it did on Thursday. The left ventricle is still significantly larger than the right ventricle. Kacie still is having problems moving her feet. The left ventricle is stretching some of the fibers that control the movement of her feet and toes. We will be meeting with the neurosurgeon tomorrow morning to determine when they will schedule the surgery for the permanent shunt. At this time it appears as though the surgery will be scheduled on Wednesday. Please pray that Kacie starts feeling better and has a restful night. Pray for a successful surgery and full recovery. Take care and God Bless! Smiles & Giggles, Donald, Kathi, & Kacie November 19, 2001 - Day +39 - Rough Night... Kacie had a rough night again last night. She was restless throughout the night because of stomach cramping and nausea. She continued to have cramps and nausea, plus she complained of headaches during the day. We noticed that she had a very little bit of fluid draining from the left ventricle. It was mainly a few drips, but it added up to 1 cc of fluid; which is more than she has drained in several days. The doctors have been testing the Dylantin level in Kacie’s blood. Dylantin is the seizure medication that she is on. They test this level once a week, and when it was tested this morning she had gone from 18.7 last week up to 37.8 today. This level is too high and some of the side effects of a high level are nausea, abdominal cramping, and headaches. They have stopped her dosage and will be checking her level daily until it is at the appropriate level. Towards the evening, Kacie started feeling better and it is probably due to the effects of the Dylantin wearing off. The neurosurgeon went ahead and had another CT scan ordered today to make sure that the nausea and headaches weren’t the result of her ventricles getting worse. The CT scan was the same as the one done yesterday, so they concluded that she was having these symptoms from the high level of Dylantin in her blood. The neurosurgeon scheduled Kacie to have the permanent shunt put in on Wednesday afternoon. He has requested that they keep her platelets over 100,000 and to make sure her clotting factor is a good level. There will be several blood tests run tomorrow and Wednesday morning to ensure that her levels are where the neurosurgeon feels comfortable. Kacie’s white blood count was 5100 today. The doctors will continue her GCSF (growth factor) at least for a few more days. They have also decided to give her the new antibiotic (Cloraphenical) for at least 21 days. The normal time frame is 14 days, but they want to make sure that they continue treating the infection until there is more improvement. Please pray that Kacie gets a good night sleep and feels better tomorrow. Also pray that all of her blood, chemistry, and medication levels are in the healthy range for Wednesday’s procedure. Smiles & Giggles, Donald, Kathi, & Kacie November 20, 2001 - Day +40 - "Mommy...Please Help Me!"... It was around 8:30 a.m. when I heard, “Mommy, please help me!” These words continuously ring out in my mind over and over. Kacie was crying out for me to help and I wasn’t sure what to do other than stand by her side. I immediately ran over to her bedside and she was complaining of pains in her chest. She was very restless and squirming around in the bed. The ICU nurse had just stepped out of the room to grab the doctor when Kacie started arching her back and was complaining that her neck was hurting really bad. As I was trying to comfort her, she immediately went stiff for about ten seconds then she went limp. I hollered for Donald to get a doctor quick because she wasn’t responding. We were extremely scared and not sure what had happened. Several doctors immediately ran into her room to examine her and they felt that she probably had a seizure. We’ve always associated seizures with someone shaking uncontrollably, yet she didn’t shake at all. It was about 20 minutes before she was able to respond again. During the entire seizure all of her vital signs were still good. The doctors took her down for another CT scan to compare it against the one from yesterday. Thankfully, the scan looked the same. The neurosurgeons didn’t notice any hemorrhaging, so they decided to continue with the original plan to put the shunt in tomorrow. Just when everything had settled down, at 1:10 p.m. Kacie got restless again. I was standing at her bedside when she started squirming in her bed and complaining about her neck. She arched her back, stiffened for a few seconds, and then went limp. Again, Donald ran out to grab the doctors. This time it took about 35 minutes before she was able to respond. The doctors gave her a medication, called Manatol; which is used to drain extra fluid. They also started her on a different anti-seizure medication, since her Dylantin level was too high. The doctors are monitoring her very closely and are testing several blood levels, chemistry levels, and drug levels before the procedure tomorrow. During the time when we were updating Kacie’s website, the neurosurgeon came in to inject medication into the spinal fluid. I was nervous at the fact that this may increase the pressure especially since she was already having neck pains. Just as soon as he injected the medication, she grabbed her neck, stiffened, and then went limp. She appeared to be out of the seizure within 10 minutes this time. Some of the new medications that they started today make her very sleepy and unresponsive, so she didn’t respond as much this time. This has been a very emotional day and we realize that she may have more seizures throughout the night. Please pray that Kacie doesn’t have any more seizures and that she has a very restful evening. Pray that the procedure tomorrow is successful. We are still waiting to hear what time the procedure is scheduled; either 8:30 a.m. (CST) or 12:30 p.m. (CST). Please pray for her all day tomorrow and ask God to be with her at all times. Smiles & Giggles, Donald, Kathi, & Kacie November 21, 2001 - Day +41 - Another One of God's Miracles... It's late and we haven't eaten all day, so I'll just make this short and simple! Kacie is doing great! This is just another one of God's miracles. Thanks for praying for her today! I'll update more to this page later this evening or first thing in the morning. TAKE TWO (written at 11:15 p.m. cst): After last night’s update, Kacie had another seizure at 10:30 p.m. It was difficult getting any sleep since we weren’t sure if she would continue to have seizures through the night. She did manage to sleep and occasionally would grab at her neck in pain. We were able to calm her and she would drift back to sleep. Then she had two more seizures this morning, one at 8:30 a.m. and another one at 10:20 a.m. This was all very scary for us. The seizures that she had this morning were more controlled because we were able to relax her. She was able to talk and only went stiff for a second before going limp. We were hoping that the neurosurgeon would rearrange the schedule and get her to the operating room early. Waiting for surgery seemed to take forever. It was 12:30 p.m. when Kacie went to the operating room. She was very sleepy from medication, that it only took seconds for her to go completely to sleep once she was given anesthesia. The surgery lasted 1 hour and 45 minutes. It appeared as though the clock stopped moving. Dr. Lam, the neurosurgeon, came in to talk with us right after the surgery. He was very excited with how well Kacie did during the surgery. They didn’t have to give her any blood transfusions and the surgery went exactly as he had planned. He said they were able to relieve a lot of pressure and he only put one shunt in. Dr. Lam explained that the other doctors were stitching her up and it would be around thirty minutes before we could see her in the recovery room. When we went to the recovery room, we were expecting Kacie to be asleep. She opened her eyes and was talking clearly to us. She even sang “You Are My Sunshine”. The doctor came in to release her to go back to her room and Kacie looked up at him and said, “What’s Up Doc?”. After several hours they scheduled her for a CT scan and several x-rays. The CT scan showed that the ventricles have decreased some in size and there was only a little bleeding. They will schedule another CT scan on Friday. The x-rays allowed them to verify the positioning of the shunt. The nurse and Donald were talking about something and mentioned the word “treat”. Kacie’s eyebrows raised and she said, “treat, I want a treat”, so we gave her a small reeses cup candy. She was smiling so much as she was eating it. She is very responsive this evening, so we let her call Grandpa, Grandma Honey, & Erin, then she spoke with Grandma Normie. As everyone is spending time with their family and friends for Thanksgiving tomorrow, please join us in thanking God for the many miracles that Kacie has experienced on this very tough journey. We are so thankful everyday, every hour, and every minute. We will always cherish every moment with our wonderful children, Erin & Kacie. Thank you Lord for watching over Kacie, guiding the doctors, and allowing her to have a successful surgery. We feel blessed and we are forever grateful. Everyone, please have a safe and enjoyable Thanksgiving tomorrow. Spend time with your loved ones and create some valuable memories. Make a commitment to have a thankful heart everyday! May God Bless Everyone! Smiles & Giggles, Donald, Kathi, & Kacie November 22, 2001 - Day +42 - Thanksgiving... Today is Thanksgiving and the blessings have been flowing. We have so much to be thankful for and we will always carry a thankful heart each and every day. Thanksgiving Day is a special time where many people spend time with their family and friends. This is the time of the year where people take time away from their daily routines to reflect on the past year. As we are reflecting on the events from this past year, we realize that although we’ve had a lot of trials, we have witnessed far more miracles than most people see in a lifetime. Our family would like to THANK everyone for all of your love, support, and prayers. We appreciate having friends and family that show their genuine care in a time that has been so very difficult. It is a blessing to know that Kacie has impacted so many people’s lives, even those who have never met her yet. The letters, emails, and messages are great encouragement for all of us. We would like to thank our church members and all the other churches for sending the quick prayer requests out through all the prayer chains. This is the first Thanksgiving Day where we were separated from all of our family. Kacie had a cherry popsicle for Thanksgiving dinner, and Donald and I had turkey. It was good, but nothing beats the home-cooked meals of our families. Several people brought by home baked pies and other desserts. A group of people came by and sang carols outside of all the patients’ doors. They really try to help get everyone in the holiday spirit. We really miss everyone, and especially our older daughter Erin. Tomorrow Erin, Grandpa, and Grandma Honey (Sam & Jeanette George) will be coming to visit. Kacie is very excited and so are Donald and I. Kacie has been sleeping all day, she had so many restless nights that the sleep will do her a lot of good. We also want to THANK all the doctors, nurses, aides, and volunteers for the many countless hours spent at the hospital helping all of these children. We have been blessed with making many friendships during our stay. Our care partner, Kate Montgomery, has been the best new friend anyone could ever have in difficult times such as what we’ve been through in the last few months. Kacie’s new friend, Molly, and her family have been another real blessing for our family. Molly called this morning to invite us for Thanksgiving dinner. Since they discontinued Kacie’s ICU status, she doesn’t have a nurse in the room at all times so we need to stay with her. Molly did say that she would be coming to visit her soon. Molly has a real heart of gold! We’ve also received a lot of messages from people in Minnesota offering to help in various ways. The people of Minnesota really have made us feel as comfortable as possible. We truly appreciate their generosity. We are very fortunate to have met so many wonderful parents of children in the bone marrow transplant unit. It is as though we have a special bond with each other. Even though every child’s situation and healing process is different, the parents are always interested in the other children and offer encouragement. The most important is our thankfulness to God. God has been with us through this very difficult journey to help comfort us and to bless Kacie. We will always cherish every moment of our lives and our children’s lives. God even hears our silent prayers and thoughts. We feel extremely honored and blessed to have a relationship with him. May God Bless and protect each and every one! Smiles & Giggles, Donald, Kathi, & Kacie November 23, 2001 - Day +43 - Erin, Grandpa, & Grandma Honey Arrive... Kacie had a very relaxing day. She rested all day because Erin, Grandpa, and Grandma Honey (Sam & Jeanette George) were coming to visit. This was Erin’s first airplane trip. She was so excited about coming the last few days that she woke up this morning at 2:30 a.m. Kacie got bathed and put on a new pair of Power Puff Girl pajamas. She looked so cute. She was so happy that her sister and grandparents were coming. Donald picked them up from the airport at 3:25 p.m. When Erin came into Kacie’s room, Erin had the biggest grin on her face. She was talking a mile a minute and you could just hear the excitement in her voice. It is a real blessing to see Erin and my parents after so long. Kacie was smiling and giggling at them. She was thrilled to see everyone! Grandpa and Grandma Honey watched Kacie while Donald, Erin, and I went to the cafeteria for dinner. Erin had so much to tell us. It has been two months since we saw each other and we really missed each other a lot. We’ve never seen Erin this excited! We bet that she sleeps really well tonight. Please continue to pray for Kacie’s full recovery and pray for all the other children that have to deal with difficult medical issues. Our really good friend, Cole Smith, needs your continued prayers for his recovery as well. The only cells that Cole is making now are leukemia cells. This is very difficult for Cole and his family. We continuously pray for miracles for Cole. We hope that everyone had a wonderful Thanksgiving Day filled with lots of joy from the heart. May God Bless everyone! Smiles & Giggles, Donald, Kathi, & Kacie November 24, 2001 - Day +44 - A Great Visit... Kacie woke up all excited this morning. She called the apartment and told everyone to “wake up sleepyheads”. She couldn’t wait until Grandpa, Grandma Honey, and Erin would be over to see her. Erin fed Kacie scrambled eggs and a few bites of a cinnamon bun this morning. The doctors have said to go ahead and let her eat any soft foods that she wants. She had a pretty good appetite today. Donald & I took Erin to the Mall of America while Grandpa & Grandma Honey watched Kacie. This gave them time to spend with Kacie and it gave Donald & I some valuable time with Erin. It seems like we haven’t seen her for a long time. The last time that we saw Erin was on September 20th. She really loved the Mall of America! We rode the roller coaster that goes around all of Camp Snoopy. It is so beautiful and lots of fun! Kacie had a great day today. She really enjoyed everyone visiting her. She kept smiling at them. The doctors were real pleased at the progress that she has been making. We may try to get her out of the bed and let her sit up in a chair tomorrow. This would give her a change of scenery and help in her recovery. When everyone was getting ready to go back to the apartment to get some sleep Kacie got real upset. She really wanted to go with everyone. After we were able to calm her for a little bit, she started crying for her sister, Erin, again. So Erin played with her and made her laugh before they left. We explained to Kacie that she needed to get some sleep before they came back over tomorrow so that she could play some more. Kacie is making good progress. She has a long recovery though. Please continue to keep her in your daily prayers for her full recovery. Smiles & Giggles, Donald, Kathi, & Kacie November 25, 2001 - Day +45 - "Whose Been Sitting In My Chair?"... Kacie had an excellent day with her sister and grandparents. She even learned some new jokes to tell the doctors. It really has done her good to see them. Kacie really loves her big sister, Erin, and they had a great time laughing and joking with each other. It was a very exciting day because Kacie sat in a chair for the first time in over forty days. Everyone was so happy to see her sitting up in the chair. She sat up for 45 minutes; which was great! Today was also exciting because she got her foley (catheter) out. She has a yeast infection, so she has been uncomfortable, plus she started having retention problems and bladder spasms. This made for a very long night. The doctors were going to reinsert the foley, but Kacie started urinating so they decided to wait. She is still pretty bloated from not going to the bathroom enough. It was sad to have to tell Erin and my parents goodbye. This visit seemed so short, yet we are very thankful that we got to see them. Please pray for their safe return home. Kacie will be having another CT scan of her head today. She has been having fevers and high blood pressures so they want to check get a sinus and chest scan also. Please continue to pray for her full recovery. Each day she makes a little more progress. It is going to be a slow recovery, but we feel extremely blessed to see how well she is doing. Smiles & Giggles, Donald, Kathi, & Kacie November 26, 2001 - Day +46 - Snow, Snow, and More Snow... Kacie had a very long evening last night. She was having bladder spasms since the foley (catheter) was taken out. This causes her to have a lot of discomfort. She was so miserable that she took all of the bandages off of her head, stomach, and chest. They had to re-bandage her several times since they have to keep the areas clean. She was upset when she realized that Erin and her grandparents weren’t still here. We told her that they would probably try to come back at Christmas, so she felt a lot better. It started snowing early this morning and has snowed all day. I believe they were predicting around 12 inches of snow; however, we heard tonight that it is suppose to continue to snow through the night and most all day tomorrow. That could mean another 12+ inches or so. The snow is really coming down hard. Maybe we’ll have a white Christmas! Kacie’s CT scan of her head looked good. The doctor said the bleeding in the left ventricle is about half the amount; which means her body is reabsorbing it. She did say that the size of the ventricles are the same as the last scan; however, she felt it would take a while for them to go down in size and it is important that they get smaller gradually. The sinus CT scan showed that she might have sinusitis, if so only a small case of it. The doctor said that she already has Kacie on the proper antibiotic if needed. The preliminary results from the chest CT scan shows good results. The next treatment plan for Kacie is to become more aggressive with physical therapy and occupational therapy. The doctor wants her to have 30 minutes of each twice a day. Hopefully, she can start to have some lessons with her teacher again too! During the middle of the night on Saturday Kacie was talking almost all night because she was so excited that Erin and her grandparents were here to be with her. She woke me up by shouting “ERIN”. When I got next to her bed I explained that Erin was at the apartment sleeping and would be back to see her. She then told me, “Mom, Erin is playing doctor! She taped up my whole head!” This was very funny and Kacie and I laughed and laughed. The night nurse said that she could hear her on the monitor talking about her Grandpa, Grandma Honey, and Erin. Since we didn’t get much sleep last night, we’re going to bed early. Take care and keep praying! Smiles & Giggles, Donald, Kathi, & Kacie November 27, 2001 - Day +47 - A Full Bladder... Lots of snow here in Minnesota! It has been snowing all day and it is very cold. All of the doctors are pleased with Kacie’s progress thus far. The physical therapist and the occupational therapist will be encouraging Kacie to do more. She was pretty exhausted after having the therapy today. Kacie’s stomach was very bloated, so the doctor ordered abdominal x-rays. After reading the x-rays, they decided to go ahead and get an abdominal CT scan. They wanted to make sure there weren’t any problems with the intestinal tract. The CT scan showed that her bladder was very full. She is having a difficult time since the foley (catheter) was removed. The doctor decided to have another foley put back in so that she can be more comfortable. The doctors have lowered her parameters for platelets to 75,000 instead of 100,000 and her hemoglobin to 10 instead of 12. This is good news since they believe she is doing much better. Please join us in praying for Cole Smith’s family since he went to be with the Lord at around 3:09 this morning. Cole’s parents, Amanda and Chris, were very strong and never stopped believing that God was watching over Cole. They have been through a lot together and need strength and comfort in the days ahead. We feel blessed to have spent time with Cole. He is a wonderful little angel and will always have a special place in our hearts. May God bless them! Please continue to pray for Kacie’s full recovery. Pray that each day will bring her closer to recovery. Thanks for all of your thoughts and prayers! Smiles & Giggles, Donald, Kathi, & Kacie November 28, 2001 - Day +48 - Emotional Day... Kacie was confused last night and again this morning, so the doctors ordered an MRI of her head today. They wanted to determine if a medication, called CSA, level was too high. The MRI looked good. The ventricles were still the same size as the last results, but the doctors have said that it will take time for them to get back to normal size. The doctors stopped one of her anti-seizure medications since they felt this was probably contributing to her being confused. Kacie was very emotional today. Several times she thought she could hear Erin talking or she thought one of the nurses’ aides was Erin. She really misses Erin and cried several times. When she was having her MRI she cried for her sister, Erin. It is good that she is showing emotion, but we don’t like seeing her so upset. The doctors said that she might have some depression after going through everything that she has experienced. Kacie had a very busy day today. She had two visits with physical therapy. She even sat on the side of the bed for 6 minutes. This was a very big deal and we were very proud of her. She started giggling so hard that she was having problems holding her head up. The occupational therapist spent over 45 minutes with Kacie having her cut things out. We have started packing up a lot of Kacie’s smiley face things in her room so that we can start decorating for Christmas. We plan to make a lot of ornaments and decorations to hang in the room. Kacie and I are making a list for Donald to get at the store, such as an artificial Christmas tree and lights. May you all have a wonderful evening! Please pray for more progress tomorrow. Smiles & Giggles, Donald, Kathi, & Kacie November 29, 2001 - Day +49 - Redesign... Kacie had fevers and high blood pressure most of the day and night. She didn’t feel all that well today. Physical therapy and occupational therapy both came in twice today to work with Kacie. Kacie didn’t work as hard since she wasn’t feeling well. We cleaned out some of Kacie’s room today to make room for Christmas decorations. We thought it would be good to change the scenery a little since she has been in here for a while. The family life center brought up several craft items so that we could make some decorations. I’m hoping to get Kacie interested in making decorations for her room. Donald & I started decorating and already it looks festive! Please continue to pray for Kacie to get better. Thanks again for all of your prayers and support! Smiles & Giggles, Donald, Kathi, & Kacie November 30, 2001 - Day +50 - Update...(Updated 12/1/01 at 2:00pm) Kathi is having trouble updating the site due to modem issues. Kacie did very well. They replaced the shunt and valve during the operation. There was no bacteria found. The pressure was 27.5. Normal pressure is 15. They drained quite a bit. Kacie is resting and will have a CT scan Saturday. Prayers are being answered!! Kathi will update the site as soon as possible. Smiles & Giggles for Donald, Kathi, & Kacie November 30, 2001 - Day +50 - To The Operating Room Again!... "Dear God, Please show us one more miracle." I feel as though this is how our prayers always start lately. Kacie is faced with yet another challenge and we are in need of God's healing hand. It is 5:00 p.m. cst and we are waiting for a call from the operating room so that she can go in to surgery. The neurosurgeons have already reserved the operating room as an urgent need. They believe she will go to the operating room around 6:00 p.m. cst. Kacie's neurologist was concerned with her not being as responsive today and the fact that she has been getting sleepier and with fever for the last three days. So he ordered a CT scan this afternoon and the results showed that both of her ventricles had enlarged. One of the neurosurgeons tried to pull fluid from a needle in the reservoir in the back of her head, but was not successful. They now feel that they need to go in and operate to determine what might be causing the problems. We will try to update this site again tonight after the surgery if possible; otherwise, we will try to update early in the morning. Again, we are asking for everyone's support. Please start the prayer chains. Smiles & Giggles, Donald, Kathi, & Kacie December 1, 2001 - Day +51 - Rest and Recovery... We apologize for not getting the website updated quickly after the surgery last night. As luck would have it, my modem card stopped working. Thanks to Tanya Utt for updating the page for me. Also, thanks to Tanya for putting together an emergency container that contained a spare modem card. The spare card will allow me to continue to update the pages regularly. Last night was very stressful for all of us. After seeing Kacie go through three brain surgeries due to the meningitis, we thought she was well on her way to recovery. It was a real shock to learn that she had to have an emergency surgery last night. We thought that the surgery started at 8:00 p.m., but after waiting for two hours we discovered that the surgery didn’t start until 10:00 p.m. When the neurosurgeon finally came out to discuss the results, we were very relieved. He said that everything went extremely well. Basically, they replaced and repositioned the shunt into her ventricles. They relieved pressure (it was up to 27.5, normal is 15 or below), and took samples of the cerebral spinal fluid to send directly to the lab. The cerebral spinal fluid came back as no bacteria found, which was good news because if bacteria were found then they would have to put another external drain in the ventricle. The neurosurgeon then replaced the valve that controls the shunt and helps it drain. Kacie was in recovery for a little bit and when finally made it back to her room at around 1:30 a.m. The nurses had to wake her every 15 minutes for a couple of hours to test her neurologically. Then they started testing her every half hour, and now it is once an hour. This made for a very long night, so she was very sleepy today. Even though she was tired, she was a lot more responsive today. She giggled and watched TV with us. The CT scan results from today looked better than the one yesterday. The ventricles appear a little smaller, the edema (inflammation) is less, and the shunt placement looked good. There were signs of a little bleeding, which is not unusual, so the neurosurgeons have already ordered another CT scan for tomorrow. We are very exhausted and will try to get to bed earlier tonight, although it is already 9:00 p.m. Our hearts are so filled with joy at knowing that so many people are praying for Kacie’s recovery. This journey has definitely been difficult, but through your love, support, and many prayers we are holding strong. Thank you and please continue to pray for her. She still has a lot of recovery to go. Smiles & Giggles, Donald, Kathi, & Kacie
|